Adam is an 8 years old high functioning autistic boy who's diagnonsis is PDD-NOS. In his first year (age 7 to 8) of dietary intervention (gluten, cassein, and soy free), and supplementation under the guidance of a DAN! doctor, he made great progress. We're continuing the journey, and documenting the ups/downs.

Monday, November 16, 2009

DAN! doc visit

Disclaimer: remember this blog is a document of OUR OWN EXPERIENCE. This is not to be used as a substitute for medical advice from a board certified physician. Anything that appears to be worded as advice are quotes from OUR doctor applicable to OUR nephew's case, and should not be generalized or taken out of context. If it stimulates discussions with your own docs, great, but I am not a doctor, and this is not medical advice for you--it's documenting medical advice given to us for our nephew. :-) Thank you for not being silly and trying to sue.

So, with that unpleasantness out of the way:

Good visit with the DAN doc today, and we're continuing our journey down this biomedical route. I continue to be impressed with the thoroughness of our doctor, how in depth the explanations are, and how thoughtfully he considers alternatives rather than a my way or highway approach. It's amazing how many in depth answers are here now that I write it all down. You sure don't get this shit with the 15 minutes you MIGHT get with your pediatrician.

Some answers I got to questions I had lined up

- what are the symptoms of mitochondrial function issues other than lethargy, and why are we experimenting with carnitine in a kid that isn't all that sloth like?

His answer here involved distinction between clinical dysfunction and something a bit more subclinical. Yeah, kids with clearly diagnosable mitochondrial dysfunction will sloth around and look like a wet noodle with no energy, but the kids with autism often will manifest a bit differently. They can be hyper, but peter out and need naps well after the age that's appropriate--just don't have the stamina. They could have low muscle tone in the upper body, and there are mental manifestations as well--the "delay" in registering or responding to language, for instance, can be helped with improving mitocondrial function. And that's why we try carnitine--to help with mitochondrial function. Reference to the methoinine cycle as it pertains to methylation was made here, I believe with a point to the large biochemical reaction chain diagrammed on the wall. Methyl donors supporting some process, etc.

- plateaus/dips and falls with speech. Seen more echolia return lately.

He noted that upticks in echolia and verbal stims aren't uncommon as mid-way steps to increased use of appropriate speech. So, these things in and of themselves aren't at all surprising when a methyl B12 dose is upped.

- what's up with the slapping of grandma? How best to discipline it? (They threatened to bring him to me and he straightened up--he knows his Uncle has no problems with taking things away from him and letting him cry and wail!)

Hard to say. It may be B12 related, but questions that were asked is whether he might be in any pain, or what things environmentally were being taken in (e.g. TV)? An over revving from too high a dose of B12 MAY be responsible, but it wasn't something they see a ton of. Disciplining - try to avoid food related discipline or reward with picky eating kids. What we're doing--finding where he lives and loves--and taking it away is recommended, perhaps augmenting the withholding of it with a visual cue like a "no slapping" sign/pecs so he can associate WHY he's not getting computer time, not getting his printout, not getting to see the show he wants, etc.

In short, no, not for Adam. Biofilms are are something he likes to address/battle IF a kid isn't responding to more traditional methods of addressing gut yeast issues, or if a strep level is shown high, kid is posturing on his stomach, is noticeably in pain or inflamed, for instance. Adam's strep level (from one of the blood/poop/pee tests previously done) was rather low/normal, and he's not doing any posturing or indicating gut pain, so for Adam at least, biofilms aren't on his radar. The biofilm protocol is quite involved, as well. Many steps including enzymes to break down the biofilm, chelation is part of it, charcoal is another step to soak up the nastiness you've created, and there are a lot of things you monkey with in order to get at goodies lurking in biofilms in the gut. Usman has been a tremendous pioneer in this, he freely acknowledges. But, for Adam's case... nah. At least not at this time.

- Scoping/pill cam work done at Thoughtful House in Austin - value? Applicable?

Not for Adam at this time. For one, it's $10k. Plus, as above--he's progressing on the protocols that are pretty well established above, and he's not showing raging yeast symptoms like carb craving, constipation, strange poop, and the like, therefore, this is not the low hanging fruit for him. He acknowledges that for those tougher cases, yeah, there really are just a handful of qualified gastroenterologists in the country that know what they're looking for in autistic patients with such treatments, and yeah, they're at Thoughtful House.

- Lousy musculature noted in Adam's shoulders, so much so the school teacher and nurse thought he'd dislocated something!

He noted this, and it's something he'd like to address with more exercise, carnitine, and maybe later even things like creatine and D-ribose for muscle building to improve with this. This lousy muscle tone is something seen frequently in his autism patients.

- increase in verbal stims and commercials noted on mB12 at 0.1mL, and echolia making a bit of a return -- unusual? Or environment?

Not unusual. As mentioned above, enhanced verbalization like this... even though it's stimmy and even though it's not communicative, is often seen as a stepping stone to using that vocalization meaningfully. Here's where speech therapy helps focus this desire to vocalize into actual communication. So in and of itself, this is not at all a concern when seen in conjunction with varying mB12 levels.

- Chlorine in pool. Kid LOVES to swim. How much to be worried about this?

Chlorine is an issue, he stated. It is something you'd like to avoid, and does cause issue for the autistic kids. Indoor pools are sometimes treated with bromine instead, which is less of an issue, though--ask the pool owner. However, the benefits of swimming, and the sensory experience, the exercise, that he loves it--all outweigh the detriments. To minimize the chlorine absorption, minimize time and give some chance for him to get rid of the chlorine. For instance, he said that maybe spending 5 hours at a water park is not such a great idea for Adam, but 45 minute exposures as we're doing weekly, less of an issue. Epsom salt baths, and the magnesium sulfate in them do help take care of the chlorine. Showering him right after of course helps. Alternatively, magnesium sulfate cream applied to thin areas of skin like the opposite side of elbows will apparently do the same thing. This stuff isn't given orally because it promotes yeast growth, hence why baths or transdermal absorption of the magnesium is a groovy thing.

- what's up with oral stims running water in and out of mouth in bath and pool?

Keep at him and make sure he knows it's not appropriate, said the doc. Try to control as much as possible.

A bit controversial, he said. It's relatively new, not terribly proven yet, and there are other more established techniques such as cranial sacral, and chiropractic to achieve similar things. And, Adam really isn't having issues that indicate appropriateness for such interventions anyway. Sorry, no notes of what those indications were.

Ran out of time in our hour with him to remember to ask about dye free antihistamines, ibuprofen, or the more wacky stuff (emotional freedom technique nuttiness, and Zyto therapy) that came up from the DAN worshop from another practitioner.

Bonus bits: we talked a bit about allergy therapy, and sublingual therapy and blood testing for focused allergens. Sadly, not practiced widely here in the US, but done a lot in other countries. This isn't Adam's biggest issues right now though, so that'll be something we may look at in the future. His IgE (or was it IgG?) levels indicate that he's clearly got environmental allergy issues (duh)and while we did greatly improve his asthma and stuffy nose situation at night greatly with eliminating food allergens, he's still got some issues depending on the season and amount of dust, etc. The doc was also able to confirm our observation that the long acting Flovent inhaler does help with stuffiness as it has antihistamine and steroid action. No wonder we saw stuffiness at night return with removing Flovent.. here we thought it was just addressing asthma. Also with Singulair, that's really just addressing allergy symptoms by suppressing histamine, and not the underlying immune system function as something like sublingual therapy or allergy shots would. He's not as big a fan of shots as there's expense and weekly visits (no wonder allergists love em, right?), vs sublingual that you can deliver at home, no pain from injection, and, no risk of pissing off the immune system with anaphlaxis. The cells under the skin CAN lead to anaphlactic shock from shots, which is why they need to be done in a doctors office, however, there's only been 4 reports ever of anaphlaxis from sublingual intervention, and apparently 3 of those patients..um... drank the whole bottle. So, essentially negligible risk. So, not our biggest priority now, but probably at some point in the future, this may be something to address. Cost, about 350-500 in focused testing for specific allergens, then to deal with both IgG and IgE issues, cost of drops is about $90/month. If you just need to deal with environmental and no food allergies, about half that recurring cost if your insurance won't do anything for you. He works with an allergist who practices this sublingual form of intervention. The other benefit to sublingual: can start it on very very young kids, whereas shots you have to wait until they're around 7.

Bonus bit 2: we asked about Cod Liver oil, among the research about vitamin A toxicity and some concerns about A levels in some cod liver oil products, and the balance of A to D. This doc wasn't concerned with the smallish amount of A in the Nordic Naturals formulation we're using, so we'll keep on keepin on.

New things for Adam's regimen now: - get the B12 dialed in, 0.075mL every 3 days? Or, 0.05mL every 2 days? He's concerned that we're seeing less group interaction at school with the higher dose, as that's a bit unusual, but not at all concerned with more verbalization even if non-sensical. Given that we're not seeing HUGE leaps in language with it, there's not much pressure to get to higher levels here. Some kids respond much more dramatically, some not at all. Clearly Adam's somewhere in the middle on mB12 responsiveness. - get him onto another natural antifungal, Goldenseal to prep for... - then get him off of the Rx antifungal Diflucan (cycling off, avoiding possible liver issues)- Try carnitine again, this time with a low dose of acetyl-L-carnitine instead of the L-carnitine that he got really wacky on and started throwing stuff and being kinda angry. - add DMG - good methyl donor, gets things into methionine and improves ye ole methoinine transsulfuration pathway that is so central to all this stuff.